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I have been taking Trileptal for 12 years now for bipolar

I have been taking Trileptal...

I have been taking Trileptal for 12 years now for bipolar disorder. WIthin the past 7 months, I have been wanting to stop the medicine because it stopped working. My psychiatrist approved. Two times this year, I have attempted to ween myself off the drug. Both times I have failed because I have experienced withdrawal symptoms. In order for me to feel normal again and stop the withdrawal symptoms, I resumed the medicine and a week maximum, I felt fine. The second time in late March, I attempted to ween myself again, but again experienced the withdrawal symptoms, a few days later in early April. Ever since I have had trouble with muscle weakness of the arms and legs only where they feel like rubber, muscle stiffness, muscle spasms and balance issues where I can walk without fear of falling down but feel tipsy. I resumed my normal dose of Trileptal thinking it would help my symptoms. This time, it didn't work. So for 3 months now I have been dealing with muscle and balance problems. After researching this online, I am fairly certain, I am having an issue with the cerebellum because it is responsible for muscle and balance movements. I recently saw a neurologist within the past two weeks. He performed an examination. He said he didn't notice anything abnormal. He did recommend I take either Valproic Acid or Lamictal to help with my symptoms but after talking with a pharmacist, he said that neither Valproic Acid or Lamictal will address my muscle weakness. But for some reason I didn't think he understood my problems with the muscle weakness at the time. Recently I thought it could be an electrolyte imbalance that is the culprit, but was tested and levels were fine. I am hoping someone here would know what could be causing these symptoms because I have had to endure this muscle issue for three months now and becoming very concerned something serious could be going on. Thank you for your time

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Answered in 2 hours by:
7/5/2013
Dr. Frank
Dr. Frank, Board Certified Physician
Category: Neurology
Satisfied Customers: 9,000
Experience: Board certified general Adult Neurologist, with experience in experimental neuroimaging and neurodiagnostics.
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Welcome to Just Answer. I am an Adult Neurologist and was contacted to answer your question.
Hello. I certainly can sense from your description that you are very concerned, that you feel you have serious side effects from weaning trileptal, and especially that you have muscle weakness, stiffness and balance issues.
This is an online service, I cannot diagnose you here without an examination. What I can say is that if you have bipolar disorder, and went to a board certified neurologist with complaints of weakness and possible cerebellar dysfunction, if after his exam, he did essentially nothing, no blood work for CPK or other enzymes, no EMG, no MRI for cerebellar dysfunction, etc. It is highly unlikely that he thought you had a "organic" problem, either related to medication withdrawal or some other entity in your brain. Valproic Acid and Lamictal are commonly given for bipolar symptoms, so maybe he felt it would be a good switch given your aversion for Trileptal (?).
As a neurologist for 20 plus years, I would also tell you that complaints of weakness and cerebellar dysfunction are pretty demonstrable, you are not going to find a board certified neurologist missing that diagnosis, in my opinion. So I would tell you that most likely, the neurologist that examined you felt you had "functional" symptomatology, meaning he felt this was more a psychiatric problem than neurological.
Please get back to me to discuss this further if I can help. Dr Frank T
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Customer reply replied 4 years ago

I understand you can't examine because it's online but wanted an opinion from a neurologist. The thing is I don't believe he really understood my muscle weakness symptoms when I saw him. If I can't convey those symptoms, he really can't help me.

The balance issues are very hard to detect because I can walk fine without falling over but feel tipsy. The muscle weakness in both arms and legs are the most prominent symptoms I have. Both arms and legs feel very weak and can best be described like rubber, Jello.

It's been three months now feeling like this and have no clue what to do about it. I can't function like this anymore. I will attempt to see him again soon because I am so concerned that Trileptal did something to me because it all started days after commencing the weening process. I don't want it to be anything serious, but three long months experiencing the muscle weakness will cause people to think otherwise. I must be proactive.

I certainly understand that. Ask him to order CPK, aldolase, and electrolyte levels (potassium, calcium, magnesium). Get a CBC, a C reactive protein, ANA and sedimentation rate. Muscle weakness has been associated with Trileptal (1-2% incidence), usually seen early on in the titration of the dose, but anything is possible. If the CPK is elevated, or any of the acute phase reactants I listed, then you should request an EMG needle exam of muscles that you feel are the most weak, and possibly a muscle biopsy.
Please get back to me if I can help., let him know that you want to be screened for myopathy, ok? Dr Frank T
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Customer reply replied 4 years ago

Okay. I am almost done. A side effect of Trileptal is ataxia. What are the chances that it could be Acute Cerebellar Ataxia?

Thank for your reply.

There is really two types of ataxia that can occur with trileptal. One is dose related as from toxicity, and can be mild imbalance. The other, an Acute cerebellar Ataxia is not going to be a situation where you are walking into his office, or walking anywhere for that matter. It is not subtle. Another side effect is hyponatremia, low sodium, that can make you feel fatigued, but that should resolve as you titrate off the medication, so it does not fit your description of the problem.

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Customer reply replied 4 years ago

Thank you for your time and response. I appreciate it.

Please get back to me if I can help. If you need additional information. Dr Frank T
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Customer reply replied 4 years ago

Based on the information I provided you, if you could diagnose my symptoms online without conducting any type of blood tests, brain scan, etc, I know it's not feasible because you need to examine me in person, what would your general diagnosis be?

Let me give you my approach to your problem. It follows the way I was trained. Neurology is one of the oldest specialties in Medicine, and it was at its glory long before there were CT scans or MRI scans, etc. Neurologists in the 1040's would sit around for hours, arguing about possibilities based on very subtle findings, in both the history, and the neurological exam, that told them the diagnosis, without any lab data. And they were probably more accurate than we are now. It was not time effective, but it worked. At that time, The history provided by the patient was at least 60% of the story, the Neurological exam was 30%, and any labs 10%.
So what is your complaint? Painless weakness, obviously subtle, because the neurologist didn't find it, correct? And a sense of imbalance. So you need to tell me why the neurologist did not find it? Did he not spend enough time with you? Is that because it is transient, or variable, it comes and goes, and was not present during the visit? And how do you describe or reproduce your imbalance? You have to tell me how someone can see your imbalance problem. If you want a diagnosis, you have to have a history and a neurological exam with findings. Since you have had this for 3 months, it is unlikely to just go away, so is it getting worse, or better? My sense is that the Neurologist did not feel he would find any organic neurological problem. Is that possible? There are diseases that can give painless weakness and cerebellar findings as well. One is neuromuscular diseases like myasthenia gravis, or related to hyperthyroidism (Hashimotos' thyroiditis). Anyone checked your endocrine function? Get back to me if I can help. Dr Frank T
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Customer reply replied 4 years ago

When I saw the neurologist at the end of last month, I believe I didn't convey how I felt as it pertains to my muscle weakness symptoms, so that's why I am hoping to see him again soon. My balance problems are barely noticeable that I can walk pretty without any issues, except I feel a little tipsy to the point where I am feeling kind of drunk. He's the only neurologist in the city I reside in though, so if I need extensive tests or another opinion, I have to travel out of state

My symptoms have been the same the entire time. But I do have an underactive thyroid for over a decade now. The last time it was checked, it was low and my doctor had to increase the dose of synthroid from 50 micrograms to 75 micrograms, but this was months ago and should feel better by now.

Well your symptom evaluation should start to see if you are weak and/or fatiguable, meaning repetitive strength testing makes you progressively weaker. Blood tests mentioned earlier will be helpful in this evaluation, please get back to me if you have questions. Please remember to rate my service as that is how I am compensated for my work. Come back anytime. Dr Frank T
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Customer reply replied 4 years ago

I have one more question for you tonight. Since I have been feeling like this for three months now but know that ultimately you can't tell for sure without a brain scan, but is it possible this problem might be permanent? I know I am thinking worst case scenario but I have to be very concerned about my symptoms and how long they have lasted.

I thank you so much for helping me out with this problem online, doctor. I am very appreciative that I can converse with a neurologist about my problem even though it's in cyberspace.

If you are past one month, you are out of the acute phase, at 3 months, you are past the sub-acute phase, and it would suggest that it will not resolve on its own. Permanency suggests that it is incurable, or at least not responsive to treatment. If this is MS for example, then you may have a permanent disorder that is treatable, and may go into remission. So there are too many variables to use the word permanent, especially without a diagnosis.
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Customer reply replied 4 years ago

I have one more question, then you are free of me. If I had those tests you recommended in an earlier post and a brain scan, would that be enough to diagnose my condition or would I need more extensive testing performed?

I intend to rate your help the highest rating of five if you must know.

The blood tests I listed early are general tests, they can be done in any hospital, they are available everywhere. But they are only preliminary, general tests, they indicate if there could be a more selective problem, If they come back, it would require additional blood tests that would be sent out, and you would have a result in a few weeks, again, the actual testing would be only a blood draw or a muscle biopsy that can be done anywhere and is available, the testing lab would be more somewhere else, but everything is shipped.
Please get back to me anytime if you have questions, if you get results and need explanations etc. Good Luck to you Dr Frank T
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Customer reply replied 4 years ago

I realize I am taking up a lot of your time and feel bad about it but the brain scan obviously would rule out the much more serious problem I could potentially have. To be honest, since I have been experiencing these symptoms for so long, I haven't been able to sleep or eat much at all. I am hoping this issue is simple to rectify and nothing serious so I can go back to a normal life.

It sounds like you would do much better to invest on getting these tests, and them be able to put it all past you.
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Customer reply replied 4 years ago

Maybe so, but a doctor will need to order them. And if the blood tests come back negative then I'll need a muscle biopsy or something more extensive. And might need to travel out of state which I am not really looking forward to. But if it's necessary, I guess I have no choice. I just want to get to the root of the problem sooner rather than later.

exactly, you need to get this done, if you get results and need explanations, I can help there as well ok?
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Customer reply replied 4 years ago

So you really don't mind me taking up an exorbitant amount of your time then?

One more question for tonight: If I had a biopsy done, it could diagnose that issue I am having but wouldn't address my slight balance issue, correct? The blood tests and CAT/MRI scan would do that, correct?

Thanks again, doctor.

Hi. You can have muscle disorders, and then have problems of balance related to weakness, or you can have cerebellar problems giving gait imbalance or instability. You would only do a biopsy if the blood work suggested you had a muscle disease. So the order is an exam to look for functional weakness, and the blood work, and look for cerebellar signs, if they are there, the MRI.
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Customer reply replied 4 years ago

This will be the last question I ask of you, but if I want, I can consult you again in the future after I undergo tests?

As a neurologist, your definition of something serious would include an autoimmune disorder like Parkinson's or MS, maybe a lesser autoimmune problem or damage to the cerebellum? I really wish I had some assurance as to what is wrong with me because all I can think about during the day is what might possibly be wrong with me but unfortunately only time will tell. All it will do until that happens is cause me to worry because so far in my life, this is the biggest health problem I have had to deal with mainly because it deals with the brain.

Thanks again.

Hi. It seems you have some health anxiety, classically sitting around all day worrying is consistent with that diagnosis. I would say to you that as a neurologist, you usually don't have to mention your weakness to me, I (and any neurologist) will pick it up on examination. So rather than worry about what might be, try to focus on the fact that a doctor thought your were normal, ok?
I am here for you, come back after your next appointment, let me know how it turned out, if you have reports from the MRI, let me know please. Dr Frank T
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Customer reply replied 4 years ago

This is my demeanor unfortunately. And it doesn't help I am bipolar and have a tendency to worry especially when it comes to health issues but this is the biggest health problem I have had to deal with so far. It just

scares me because this has been lingering for three months now. I hope you understand.

Thanks again for your medical advice. I will get back to you in the future to inform you of my current status.

I do understand, and I am here to help, but you need more information before you would have reason to worry, that I can confidently say from here. So get your evaluation, be upfront with the doctor, and please come back if you have results that you wish to discuss. Dr Frank t
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Customer reply replied 4 years ago

I thought I am being transparent with my symptoms to begin with. That's why I am here. For a second opinion until I see my neurologist again.

The biggest reason I have to worry is that these symptoms sound like they affect the cerebellum and started the same time I experienced Trileptal withdrawal so maybe that drug caused me to feel this way. And been a long term problem that hasn't

improved.

I am possibly the most difficult person you have dealt with on this website for advice and apologize if that is the case.

When I asked you if you discussed weakness with the neurologist, you said something to the effect that it just didn't come up, or something. I don't understand the disparity between your concern here, and then your nonchalance with the doc. Something does not fit. Cerebellar problems are usually something you cannot conceal in an examination. So again, why the concern now? You are not difficult, but I don't know how much I can help you here online only. Have you discussed this with your psychiatrist?
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Customer reply replied 4 years ago

The muscle weakness part did come up but I believe he was more focused on the other symptoms he deemed more serious like the double vision for instance. The double vision has been tied to the Trileptal. So at the time I was under the impression all of my symptoms were tied to that drug due to the withdrawal but now I have been back on it for a month now and other symptoms like the muscle weakness, tightness especially in my legs and slight balance problems would have subsided by now because when I had these issues in the past from attempting to get off the drug, resuming Trileptal solved them all. Plus I didn't get much time to really address all of my concerns because of time constraints. I hope you understand now.

I see, let me know how I can help, when you get the MRI, if you have questions, get back to me, ok? Dr Frank T
Dr. Frank
Dr. Frank, Board Certified Physician
Category: Neurology
Satisfied Customers: 9,000
Experience: Board certified general Adult Neurologist, with experience in experimental neuroimaging and neurodiagnostics.
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Customer reply replied 4 years ago

Thank you again for your support. I'll finally be relieved if and when I am diagnosed so I can stop worrying about my health during the day.

You are welcome, good luck, let me know if I can help.
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Customer reply replied 4 years ago

I kind of "promised" that I wouldn't contact you again until my results of my MRI were known. I have to wait until this coming Monday before those results are known because his office is on vacation which prolongs the agony for me not knowing. But my neurologist suggested before he ordered the MRI my problem could be attributed to Lyme Disease. To be honest, that thought never crossed my mind until I remembered in January we baby sat my sister's dog for a few days and my sister's dog had a problem with ticks. I have no recollection of ever being bit by a tick and the fact I have never noticed a bull's eye rash on any part of my body didn't concern me at the time. All I am asking, is there a possibility I could have Lyme Disease and not know it?

Thank you

HI. Let me know when you get the scan ok?
Dogs don't carry the Lyme tic. It is on plants as you brush by, where deer have been the night before.. they are not big tics at all , not like tics you see on dogs. They are tiny, the head of a pin, called "nibs" because the juvenile tics carry the spirochete. you will only see a tiny black spot on the skin, and only about one third of patients notice the rash, so it really doesn't help if you missed both. But do not worry about dogs. So, yes, you can have Lyme and not have noticed it, that is the most common presentation. Do you remember ever having a severe fever, followed by joint aches?
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Customer reply replied 4 years ago

Well, I obviously don't know much about Lyme Disease. He was the one that brought it up and was thinking that it could be a possibility because my sister said she has found ticks on her and would have thought they came from her dog.

I have not had a high fever of around 102 since I had the flu years ago so I guess it can't be Lyme Disease then.

I am trying to think of something recent that I can attribute these symptoms to and the only thing I can think of unfortunately is Trileptal.

My biggest fear is I will be subjected to a battery of tests and won't be given a diagnosis because they can't pinpoint what is causing my symptoms. I hope my doctor will be aggressive, dedicated and thorough from here on out because I need to know what is wrong with me sooner rather than later.

I will get back to you after Monday.

Thanks.

Customer reply replied 4 years ago

I got my results for my MRI today and said everything is normal. But the strange thing is they were over the phone from the receptionist and not in person from the doctor. Basically she told me he didn't think my problem is neurological and wanted me to see my doctor about it. I am not able to see my doctor until August 15th which is 3 weeks from now because they are full of other appointments. If my doctor ordered those tests you recommended and everything came back normal, I would need another neurologist to conduct a muscle biopsy and/or EMG, that would entail seeing another doctor elsewhere? My main question for you is what are the chances this problem is drug induced, if so, is it easy or difficult to diagnose and in your opinion, what potentially would be a treatment for it if at all? If you recall, this problem manifested itself around the time when I commenced the Trileptal weening process in early April. Or do you think this could be a metabolic issue because as I mentioned earlier I have an underactive thyroid and recently my dose increased from 50 micrograms to 75 micrograms a few months ago but since then my levels were checked and was normal. The good news, if any I am not getting any worse. The bad news is I am not getting any better.

Thank you

Hi. You have to focus on the good, and try to keep the bad at bay, ok. Very good news with the MRI, that excludes so many things, it is a goldstandard of good brain health. I really would strongly suggest you focus on a behavioral therapeutic approach to this problem, and not worry about metabolic issues. Your change in thyroid medication is not the problem nor the answer. You recognize you have had issues of health anxiety, and I would ask you to focus 95% of your effort on fighting that monster. Try to move on and make life successful.
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Customer reply replied 4 years ago

The reason why I am so anxious is due to the fact I have felt like this for four months and am not getting any better. I am not sure what you are attempting to convey here. Are saying that you aren't sure what it could be and wait until I see my doctor about it? And you aren't sure that it could be drug induce either? Please elucidate if you can.

I can not diagnose you from here, but I can only use information that you provide, and my experience of having worked as neurologist for almost 25 years. When you complain of double vision, " Ever since I have had trouble with muscle weakness of the arms and legs only where they feel like rubber, muscle stiffness, muscle spasms and balance issues where I can walk without fear of falling down but feel tipsy." You admit to having a bipolar personality, and having health anxiety, and in all of that setting, the neurologist, who I expect has been well trained as we have to pass fairly rigorous testing, tells you that this is not neurological after the normal MRI, well I have to consider the obvious, that this is a conversion reaction. I really think you need to discuss this with your psychiatrist first, before getting more testing like a muscle biopsy. In Neurology, with all its complexity, we say, "common things are common", and if you are in complete denial about trying to deal with your symptoms, then I really cannot help you.
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Customer reply replied 4 years ago

So you are saying this is psychosomatic? The anxiety is tied to my symptoms. Not the other way around. I feel that this is warranted at this point. It's quite evident now. Had I not divulged that I am bipolar, maybe you would view me differently. Maybe not. After reading your latest comments, I feel like I am being discriminated. But I did decide to pay you after all for your advice and could have said at some point you were done with me. I am a big boy and can take it. My symptoms are real and I wouldn't be asking for another opinion if I didn't have something wrong with me.

You are being too defensive, that will not help, you just have to exclude my comments, by seeing the therapist/psychiatrist and asking him. That is all I am saying, nothing discriminatory, really. good luck to you, I hope I pushed you in the right direction. Dr Frank T
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Disclaimer: Information in questions, answers, and other posts on this site ("Posts") comes from individual users, not JustAnswer; JustAnswer is not responsible for Posts. Posts are for general information, are not intended to substitute for informed professional advice (medical, legal, veterinary, financial, etc.), or to establish a professional-client relationship. The site and services are provided "as is" with no warranty or representations by JustAnswer regarding the qualifications of Experts. To see what credentials have been verified by a third-party service, please click on the "Verified" symbol in some Experts' profiles. JustAnswer is not intended or designed for EMERGENCY questions which should be directed immediately by telephone or in-person to qualified professionals.

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